. . . a funny old life with multiple sclerosis

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I quote, from a DWP representative who visited me for an hour, with me being the last one on her list of six for that day:

‘she … raised both arms up to her head running her fingers through her hair.’

That is an actual ‘observation’ of what it is like to live with MS.

Funnily enough, all her comments create an image of a meeting I don’t actually recall taking part in. Apparently I was ‘dressed appropriately for the climate and was well-kempt.’

If you consider a worn and old t-shirt and jogging bottoms (minus a bra) to be well-kempt, I would seriously worry. Likewise my hair, greasy and lank, which I hide under a woolly hat most days.

My ‘memory is good’.

Yeah, I wish.

I ‘handled my ID well’ – which is strange as my mother did that for me.

My ‘speech was normal and I showed no signs of distress’. So she obviously forgot when I asked her to give me a break and stop asking me question after question after question, with the sole aim of catching me out.

Apparently I ‘visit family often’. My mother lives two streets away, my sister a few miles. I haven’t seen my sister in months and my mother visits me by taxi.

I could go on but I won’t bore you with the endless lies.

One last thing, I was ‘chatty and engaged’, with ‘full eye contact’. Which is strange as she (the Assessor) never looked directly at me once. She was so disengaged she might as well have spoken to my back wall.

I am entering the sixth month of DLA to PIP assessment.

Six months.

And according to this person, I should go through this again every three years.

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It started with a slow but distinct rumbling and gurgling in my stomach and I thought no more of it.

Until it started to grow.

The upshot is, I have a hernia. I mean, what? Huh? How?

I’ve been to my Doctor and I’m waiting for a scan (‘the same one you get when you’re pregnant. You’re not pregnant are you?’ chirruped my Doctor, as I chuckled), but this lump in my stomach doesn’t seem to want to wait and grow at a semi-decent rate – it’s morphed from a cute little egg-size into a full-blown grapefruit in the space of weeks.

And it moves. Even the Doctor was impressed, and she’s probably seen everything, warts and all.

Of course, as with MS, I’ve been inundated with horror stories – aunties and uncles who ended up strangling their hernias or being strangled by them, hernias that popped, hernias that led to … more hernias. There’s even support groups out there, filled with more horror stories, along with some excellent advice (I am awaiting a hernia support belt – extra strong – as I write).

To be honest, it’s uncomfortable in the extreme. I may as well have a brick strapped to my stomach. I look weird in the mirror, my podgy belly is still there, but now with a pronounced lump on top of it.

In a bid to embrace this unexpected addition to my already raddled body, I’ve decided to name my hernia Phyllis. My MS has many names, most of which are too rude to publish. More often than not, it’s a malign shadow – the exact replica of my body, but completely different when it moves.

And that’s the great thing about hernias! Yup, there is one. It’s got a definable path. I know what to expect. I’ll most likely have a quick operation, where the Doctors open me up and squish everything back inside then staple me back together. Or strap me up with gaffer tape. I don’t mind, I’m easy.

It’s refreshing in a way. Like having a cut I know will heal. Or a headache I can take a tablet for. So although it’s dominating my life at the moment, it’s temporary and it will go.

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The Boss (aka Best Friend) has been a huge support throughout this whole DWP nightmare.

Every day over coffee, I bore him with the next instalment, picking over and analysing every tiny thing, such as, ‘the assessor smiled at the cat, surely that’s a good sign?’

So last week, when I was munching on a healthy carrot stick (I’m trying) during a break, he asked if I wanted to go to Switzerland. In light of what I know goes on in certain places there, I was momentarily concerned.

I ran through other possible scenarios in my mind – the mountains? The lakes? The clocks and chocolate?

None of these. Did I want to drive from Wales to Switzerland to visit … the Geneva International Motor Show?

Erm. Hmm. I like travelling. It would be amazing to get away. I don’t have to do anything, except sit there, which I’m really, really good at. He’d do all the driving, sort out the tickets, plan the route and all I’d have to do is be a back-seat driver and eat Gummi-Bears. I wouldn’t have to worry about anything for six whole days.

I’m going spare at home, fears and anxiety swirling around my mind. I wake in the wee small hours, wondering how to live on a negative income despite working, how to make four cans of baked beans last a week, whether the cat could adapt to a rice-based diet. I’m in a weird kind of limboland. Again.

The Boss could have said anything – car show, tool fair, fly fishing – and I’d have leapt at the chance, metaphorically speaking. The chance to get away from all this is too alluring to pass up. And now that The Teenager is safely ensconced and thriving at Uni, there’s nothing to hold me back.

Except MS. Comfort zone. Sofa.

However, if there is one positive thing to come out of this whole ghastly DLA/PIP reassessment process, it has made me realise just how home-bound I am and just how much I don’t do any more. From someone who used to hop on planes like they were going out of fashion, I’ve been reduced to watching the clouds pass by through my window, while I lie on the sofa scrolling through Netflix films.

I like the idea of seeing different clouds and breathing in different air. It feels like a stay of execution, but if it’s in Switzerland, maybe I can handle it at a distance.

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Well, the forms are in and the date’s been set for my face-to-face PIP assessment.

Do I spend the next couple of weeks fretting and worrying?

I did that yesterday and ended up a nervous wreck, my brain fit to explode. I can’t live this way and I’m not ready to give up, not just yet.

My MS is my MS. No one knows it better than me and only I know what it’s taken from me and what it continues to take, bit by bit, like some insatiable beast.

In the back of my mind, there is always thatalternative; give in, give up. Admit defeat. Believe me, I’ve been close far too many times to count. It whispers in my ear. I’m there right now, teetering on the edge.

Everyone with MS knows that we just have to take each day as it comes. You can go to bed one evening, congratulating yourself for a ‘good-ish’ day (which to anyone else, would be pretty dire) and be on the floor (literally) the next. We take nothing for granted.

PIP is nothing to celebrate; the title of this blog is of course heavily ironic. MS is still incurable. I still spend far too many days alone at home, pinned down by endless symptoms. My life has shrunk to a fraction of its former size. Will I be able to convey this? I truly hope so.

Anyone going through this PIP exercise is aware that you have to focus entirely on what you cannot do, and for some of us, this is a brutal and cruel wake-up call. Over the years we adapt and accommodate each limitation, perhaps not noticing until all those limitations builds up to a traumatic picture of loss. In some cases, like mine, MS appears overnight with a massive relapse, affecting speech, balance and cognitive functions all in one devastating blow.

I had no time to adapt back then and the change was instant, with every area of my life affected – bye-bye job, bye-bye partner. In short, I am battle-scarred, and this is yet another battle.

I am scared. There, I’ve said it.

Actually, I am terrified. The stakes are pretty high and I am trying to block out what could happen. So, to end on a positive note, in other news:

The Cat seems to be cured of her flea-bite allergy. Yay. She has also overcome her resistance to a basket I bought her in a ‘Pets At Home’ online sale. After ignoring it for weeks, deliberately sleeping right next to it, she is now in it, and loving it.

The Teenager has popped home a few times to use my washing machine and play loud music. I have ear plugs, it’s fine.

The Boss brought over two huge boxes of chocolates last week, when I was off work and feeling poorly.

It was white, innocuous, mixed in with pizza and conservatory leaflets, but I immediately knew what it was.

The DWP has invited itself to my house in less than two weeks, despite me not requesting a home visit. How … lovely.

At the appointed hour, they will assess whether I do indeed have an incurable, degenerative illness. With this hour-long meeting, they will decide my future – should I be allowed to continue to live and work in genteel poverty or should I be rendered unable to pay my bills and therefore become homeless?

I knew an assessment was coming, I just wasn’t prepared for it to be at home.

My house is my sanctuary and comfort, from everything. Every single item I have here is precious and the last thing I want is some hawk-eyed official casting their penetrating gaze over … my life?

To be honest, it will feel like an utter invasion. The last person I had here in a professional capacity was my lovely MS nurse, back in 2012, and I welcomed her in with open arms. An as-yet unnamed official (they discard such niceties when you’re ‘claiming benefits’), will be uncomfortable and invasive to say the least.

And that’s what it feels like – an intrusion into my personal space. Is there anywhere they won’t go? I have described, in excruciatingly personal detail, every area of my life. Things I wouldn’t tell my closest friends. Things I can barely come to terms with myself. Every tiny little detail of every single thing I cannot do. Or do, without wanting to.

Back in 2011, I could not know that embarking upon the MS diagnosis-journey would mean baring my soul, my brain and to top it all, my entire life. And that’s without the relapses, the gruelling treatment, its side-effects and the ongoing symptoms and medication.

Yet I have no choice. My quiet, unassuming, boring life could be ended in an instant.